Overview

abstract

PURPOSE: The objective of this study was to further our understanding of the decision-making process near the end of life. Specifically, we ascertained the seriously ill patients' preferred role in the decision-making process, what factors were associated with this role, and how this stated preference related to physicians' perception of preferred role. MATERIALS AND METHODS: Prospective cohort study of hospitalized patients with end-stage congestive heart disease, chronic pulmonary disease, cirrhosis, or metastatic cancer. Eligible patients were interviewed to ascertain their personal views on end-of-life decision making, desired role, and level of symptoms experienced. RESULTS: A total of 135 patients were enrolled in this study. The majority of patients (103, 76%) had thought about end-of-life issues although only 48 (36%) had discussed them with their doctor in the hospital. With respect to preferred role in decision making, in the scenario of a competent patient, 14 (10%) preferred to leave all decisions to the doctor, 12 (9%) preferred that the doctor make the final decision after considering their opinion, 43 (32%) preferred that the doctor shared responsibility with them to make the decision, 32 (24%) patients preferred to make the final decision after considering the doctor's opinion, 21 (16%) preferred to make the treatment decision alone, and 13 (10%) did not answer. Physicians were not able to accurately predict patient's preferred role nor could the variability in patient choice be accounted for by demographic or symptom covariates. CONCLUSION: Seriously ill hospitalized patients desire to discuss end-of-life issues with their physicians but their preferred role in decision making is variable and difficult to predict.